Sue and John L. Weinberg Cystic Fibrosis Center

Children with cystic fibrosis receive the highest quality care from ColumbiaDoctors pediatric pulmonologists at the Sue and John L. Weinberg Cystic Fibrosis Center.

Our History

Columbia has made vital contributions to the world's understanding of cystic fibrosis, an inherited condition that affects the respiratory and digestive systems. They include:

Cystic fibrosis was first described in 1938 at Babies Hospital by pathologist Dorothy Anderson, MD.

Pediatrician Paul di Sant’Agnese, MD, developed the sweat test for cystic fibrosis that continues to be the gold standard for diagnosing cystic fibrosis.

In 1958, Carolyn Denning, MD, who served as director of Columbia's Cystic Fibrosis Center, was the first leader in her position to use a multidisciplinary team approach to manage the condition.

Today, ColumbiaDoctors's Sue and John L. Weinberg Cystic Fibrosis Center at NewYork-Presbyterian/Morgan Stanley Children's Hospital is fully accredited by the Cystic Fibrosis Foundation. It works in partnership with the ColumbiaDoctors Cystic Fibrosis Center at Stamford Hospital in Connecticut. Hossein Sadeghi, MD, directs the center and oversees a team comprised of a nurse practitioner specializing in cystic fibrosis, research nurse, social worker, nutritionist, respiratory therapist, and naturopathic physician.

Our Services

Children receive the highest quality of family-centered care from our renown specialists as well as integrative and complementary therapies. Our goal is to improve the length and quality of life for all patients with cystic fibrosis in our community and across the globe until a cure is found.

Columbia's Cystic Fibrosis Center is unique due to our emphasis on the importance of sleep in health management. Two board-certified sleep medicine doctors are part of our team: Carin Lamm, MD, and Hossein Sadeghi, MD.

Our center sites in New York and Stamford also participate in “Bridge of Hope,” a global cystic fibrosis program that provides care to individuals from regions of the world with inadequate support. Through this program, we provide an initial assessment, evaluation, and management plan with a chance to communicate with local providers in patients' hometowns. We aim to lessen the rate of progression of cystic fibrosis until good care is available in the places where these patients live.

Our Team

ColumbiaDoctors pediatric pulmonologists meet regularly with a multidisciplinary team of nutritionists, respiratory and physical therapists, social workers, nurse practitioners, nurse educators, and integrative and complementary therapy specialists to review and design personalized therapy plans for patients.

We also work with pediatric specialists in other areas, including endocrinologists, gastroenterologists, geneticists, infectious disease specialists, psychiatrists, and otolaryngologists. Sarah Lusman, MD, was selected to hone expertise related to gastrointestinal disorders in cystic fibrosis patients as part of Columbia's participation in the DIGEST program (Developing Innovative Gastroenterology Specialty Training).

Our team also collaborates with the ColumbiaDoctors Gunnar Esiason Adult Cystic Fibrosis and Lung Program to ensure a smooth transition and transfer of care from childhood to adult life.

Cystic Fibrosis Transition Program

The Cystic Fibrosis transition program helps ensure that the family and the individual with cystic fibrosis are prepared and experience a smooth personalized transition from pediatrics to adult care over a few years. Transition clinics are set up separate from the regular clinic visits to specifically address transition-related concerns. The clinics are coordinated by Victoria Piane, CPNP. The transition team tailors a personalized plan for interested individuals 14 years and older.

Our Advisory Board

The Cystic Fibrosis Family Advisory Board is an integral part of our center and empowers patients and their families to be full members of our care team. This board successfully coordinates family educational sessions at the New York and Connecticut sites.

Affiliate Center Meetings

Three times a year our Pediatric Cystic Fibrosis team, as well as members from the infectious disease, gastroenterology, genetics, ENT, and the adult cystic fibrosis team, meet with colleagues from our affiliate centers at Good Samaritan Hospital (NY), St. Joseph’s Hospital (NJ), and Stamford Hospital (CT) to improve quality of care for our patients.

Kossoff Lecture

The Stephanie Lynn Kossoff Memorial lectureship was established in 1979 in memory of Stephanie Lynn Kossoff, the 19-year-old daughter of Mr. and Mrs. Burton Kossoff who died of cystic fibrosis. The purpose of the lectureship is stimulation of studies on the pathogenesis and treatment of cystic fibrosis.

Research

As a participating center in Cystic Fibrosis Foundation’s Therapeutics Development Network, Columbia University’s investigators and research staff work to promote quality, safety, and efficiency in CF clinical research. There is a dedicated cystic fibrosis research nurse coordinator. The aim is to speed the delivery of new and improved therapies to people with cystic fibrosis.

For further information about ongoing research trials, contact Constance Rubenstein, RN (Connie) at (212) 305-5122.

Global Medicine and Bridge of Hope Program

Dr. Sadeghi and Dr. Mellins were instrumental in the development of the pediatric pulmonology subspecialty in Iran. In 2015, the Iranian Cystic Fibrosis Foundation was founded by Dr. Golnar Raissi and Dr. Sadeghi.

Our center sites in New York and Stamford also participate in “Bridge of Hope,” a global cystic fibrosis program that provides care to individuals from regions of the world with inadequate support. Through this program, we offer an initial assessment, evaluation, and management plan with a chance to communicate with local providers in patients' hometowns. We aim to reduce the rate of progression of cystic fibrosis until good care is available in the locations where these patients live.